Tag: cancer

The wind was fierce—and cold—the morning that I wrote this blog post. It shook the wind chimes hanging on the front porch; their melody not the slow and calming tune that I had grown accustomed to. Instead, it was rushed.

Still beautiful, but rushed.

In many ways, I have lived my life this way—rushed, and rushing myself. Alderaan is helping me to break this habit.

My fiancé and I didn’t have Alderaan (Aldie) for a great length of time before I relapsed with Acute Lymphoblastic Leukemia. I knew that cancer treatment would impair my immune system, so I sent both of our cats to my parents’ house where they would be cared for (and downright spoiled). We’ve been separated from Alderaan for so long that it’s almost as though we are welcoming a new cat into our lives.

For instance, who knew that he would turn out to be an actor? He rolls—yes, rolls—down the stairs, just to antagonize Luna (the puppy). Trust me, this is an act. He may have short, little legs, but he’s perfectly capable of walking down the stairs. I’ve seen him do it at least a dozen times.

Behind the curtain, preparing for the next act.

Another revelation: Aldie is an early bird. He wants to be fed breakfast, promptly, at 5:30am. Then, once his stomach settles, he wants someone to play laser pointer with him. I’m usually quite busy in the morning—especially on mornings that I have appointments to prepare for—but there’s this quiet voice that tells me to slow down, to cherish time spent with Aldie. For this one moment, the most important thing in my life, is watching Alderaan chase a red dot across the floor.

Another act: pretending to sleep

It’s not going to be this way forever, so I have decided to enjoy the little moments whenever I can.

My fiancé and I recently attended a memorial service, “Celebrating the Life of Douglas R. Skopp, Ph.D.”. We both deeply respected (and continue to respect) Dr. Skopp. We miss him. There were a variety of speakers at the service: Dr. Skopp’s colleagues, members of the community, former students. Some of the words that were used to describe Dr. Skopp were:

Valiant.

Noble.

Compassionate.

Extraordinary.

Some of the speakers expressed the desire to have just one more cup of coffee, or one more dinner with him—and, it hit me then, that my fiancé and I were quite fortunate to have had that very opportunity in September of 2017.

Right before my bone marrow transplant, we had had the privilege of having dinner with Dr. Skopp and his wife, Evelyne. It was a wonderful, inspirational evening—and exactly what I needed before shipping off to Boston for the transplant.

Dr. Skopp had been a mentor and a source of light for me since the first time I had had cancer in 2010. He mentioned me in the “Afterword and Acknowledgements” of his novel, Shadows Walking. To paraphrase, he felt that I was teaching others how to appreciate every day.

He was wrong about that; he was the one that taught me how precious every moment was. I was young and I was angry the first time I had cancer; his positive outlook turned my negative one around on countless occasions. He gave me hope. He encouraged me to keep focusing on healing, to keep learning, to keep living. I wish I had had the foresight to say ‘thank you’ before it was too late.

Perhaps the most significant moment at the memorial, for me, was when one of the speakers relayed some of the advice that Dr. Skopp had once given to him. It was, as follows:

“The most important promises to keep, are the ones [that] you make to yourself”.

This advice has stayed with me, every day, since the memorial. I ask myself, what promises have I made to me? Have I made any of them a priority?

The answer came to me with the click and the tap of a keyboard; continuing to write and, one day, publish some of my fiction—these are promises I have made to myself. The service rekindled my commitment to these promises.

Another important promise: to play laser pointer. Although it primarily benefits Alderaan, promising to play laser pointer is also a promise to me. It’s a promise to slow down, live this life, and love its little moments.

As always, Dear Readers, thank you for your prayers, your love, and your light. It has carried me through so much this past year. Thank you, thank you, thank you.

I really do try to see the positive in situations…but, I’m human…and, sometimes, I need a little help to see what’s right in front of me.

For instance, this past Wednesday, I was at my parents’ house (where the majority of my belongings still are). There was a pedestal mirror atop my long-neglected bureau.

In the house I share with my fiancé, the only mirrors that we have are in the bathroom. So, if someone is in the bathroom, you’re out of luck. You can try catching your reflection in the television screen, but best wishes to you. Brushing your hair into place isn’t going to happen until the bathroom is vacated.

You learn to live with minor inconveniences such as this.

Seeing my old pedestal mirror, though, I decided to take it home with me. I’d put it in our bedroom or my office—someplace where I could try to tame my wild curls whenever the bathroom was otherwise occupied. I began dusting it. As I did so, however, the mirror snapped off of the pedestal. It landed on the cement floor and cracked like a hard-boiled egg.

“Great,” I thought, recalling the superstition that breaking a mirror comes with a sentence of 7 years of bad luck.

As a life-long pessimist, I instantly started reciting all of the major and minor health problems that, due to my medical history, I could probably develop in the next 7 years. It was a depressing and anxiety-filled list. Seeking some solace, I told my fiancé about the mirror. His response was perfect:

“I guess that means you’ll be alive for the next seven years,” he said. “You have to find the silver-lining in these things.”

I had to think about what he had said for a minute or two, before the meaning of it sunk in. You do have to be alive to have bad luck—or any luck at all, really.

“I want more than 7 years,” I countered.

“Of course,” he replied, “I want you to have more than that, too.”

Point of Clarification: no doctor has told me that I have an expiration date, coming due in seven years. This is just our morbid sense of humor and how we decided to interpret a broken mirror and the superstition of 7 years of bad luck. Now, I know a broken mirror can’t guarantee health or life, but I’m going to pretend that it can. That kind of assurance, even if only a work of the imagination, is truly a silver-lining.

While searching for silver-linings, I have also rediscovered a pair of lovable, silver ears.

During my last check-up in Boston, I asked if our cat could live with us again. I was afraid to ask since my immune system hasn’t finished developing yet. The answer, though, was, ‘yes’!

After a year of being cared for by my parents (thank you, Mom & Dad!), and losing his big brother Wallace, Alderaan (Aldie) has finally moved in with us. My brother delivered him to our front door on Wednesday night. He set Aldie in his new litter box while I prepped his dinner.

The next day, October 11th, Alderaan had his fourth birthday. He celebrated with a long nap underneath our bed. He’s a small guy, weighing in at only 11.5-pounds. Aldie is special, though. I believe he knew I had cancer long before any of my doctors even considered it a possibility.

Why do I think this? Before I was diagnosed with relapsed Acute Lymphoblastic Leukemia, if I was sleeping on my stomach, the little guy would curl up on my back—in the exact spot that my tumor would later be found. He was a heating pad, trying to ease the pain radiating from my lumbar spine.

Alderaan took care of me this past Thursday night, too. When I was too restless to sleep, thrashing around and trapped in some dream, our little feline decided to settle down on my feet. Aldie, although quite small, has the power to turn into a cinder block. He somehow becomes incredibly heavy. Utilizing this hidden superpower, he prevented me from continuing to move. I still couldn’t sleep, but it’s the thought that counts.

I can’t even begin to describe how wonderful it is to have my silver ears back.

Thank you, Dear Readers, for continuing to send prayers, love, and light my way. It means the world to me.

In the world of Bone Marrow Transplants, the anniversary of your transplant is considered to be your “New Birthday”. I just turned “One”.

I think I’m supposed to feel elated.

Or proud.

The truth is, all I feel and see are confused flashes of that hospital room.

I can’t remember much of my time as an inpatient. Preparation for a transplant is both physically and mentally demanding. The chemotherapy that I was given in Boston—just days before the actual transplant—was harsher than all of the chemotherapy that I received during cancer treatment. The Total Body Irradiation completely drained me.

I was also higher than a kite on pain meds, dreaming about being trapped in a basement…and something about cave trolls. What I do seem to remember are the challenging moments. My mind has a penchant for that. Don’t ask me to remember happy milestones or joy. I’m not wired to recall pleasant memories, although I wish that I was.

Breathing would be a lot easier if I could focus on positive details such as the pigeon that sat, every day, on my windowsill—as if it were watching over me. Was it an angel? Or just another city bird? I remember naming it, “Bird Butt”, because it always had its tail feathers pressed against my window. I couldn’t take a decent picture of it with my cellphone…so…if it was an angel, I can’t imagine that it was too impressed by me or my “creative” naming abilities.

This slideshow requires JavaScript.

So much has happened in the year between naming “Bird Butt” and the present day.

The field I admire—the one across the road—has been turned into square bales. I watched a farmer mow the field and bail it. I began to appreciate him as much as I did the field. He walked with a cane and, yet, somehow was able to climb up and down from the tractor’s seat. As someone that once relied on a cane to walk, I know that this was no easy task. This man was determined. A hard-worker. Someone to respect, to emulate.

Do I miss my former view? Yes.

The field, though, has not stopped giving me beautiful moments to ponder. Do I love what it has given me now, even more? The answer: a resounding yes!

Whenever the shadows are long, there is a rather large cat that prowls across the field. It has probably been doing this for longer than we’ve lived here—the tall grass kept it hidden from sight. Now, however, the feline is visible. I can’t tell if s/he wears dark stripes like my Wallace did, or if its coat is entirely sable in color. Either way, its presence gives me joy. Hope. Dare I say, happiness?

So, yes, I ate cake on my “First Birthday”. My fiancé bought it for me and it was rather tasty. There weren’t any candles to blow out, but I made a few wishes anyways.

I wished to become a positive-thinker (I would like to believe that I’ve made some progress in that department).

Thank you, Dear Readers, for all of your prayers, kind words, and love over this past year. Please continue to send light. The recovery process has only just begun. I have three to six more months on steroids and my anti-rejection medication. They’re both immunosuppressants, so I will still have to be cautious about what I expose myself to.

And, yes, like most women, I didn’t take kindly to the new, higher number.

I am not upset because I am getting older—aging doesn’t bother me. I am well aware that not everyone gets the opportunity to grow older. Neither am I bothered by the fact that increased age brings death closer. Truth be told, death and I have been flirting with each other since I was 23. I have lived 8 years beyond my original expiration date (July 2010).

No, 31 is a difficult number because, in my life before cancer, I had decided that 31 was the perfect age to start a family. I imagined I would have a stable, good-paying job. I thought that I would be in a healthy, happy relationship.

Check no, on the job.

Check yes, on the relationship—I have found my soulmate.

But, fast-forward to November 2016, when I was officially diagnosed with Premature Ovarian Failure. This is what cancer treatment can do. It can destroy cancer cells, but it also destroys anything that grows quickly—including eggs. Although still to be confirmed with additional blood tests, 2017’s 8-months of cancer treatment and then bone marrow transplant preparation (which included high dose chemotherapy and Total Body Irradiation) did nothing to help my ovaries.

Every hot flash tells me that any hope for a biological family is now gone.

I grieve for this dream.

2018, however, is not going to be the year that I give up. It’s the year that I am going to move forward. Maybe I can’t have a biological child (who would really want my genes anyways?), but Seth and I will spend time researching adoption. We will make plans. We will move toward that goal, together, and make whatever changes are necessary to be eligible to adopt.

There are so many children in need of a safe and loving home; someday, we hope to provide just that. Until then, we’ll be crazy cat parents to these two majestic creatures:

As always, Dear Readers, thank you for your love and continued prayers. You are our strength and the light guiding us on this journey. Thank you, thank you, thank you.

I slept through most of Blizzard Stella. As the storm’s fluffy snowflakes began to drift earthward, I let the pre-medications and chemotherapy take me away. I burrowed underneath my hospital blankets while my significant other stretched out in the recliner beside my bed. I closed my eyes, falling asleep to the sound of his breathing.

I’ve missed the sound of him sleeping.

Maybe that’s a strange thing to say or to miss…but I do. I miss the comfort of each inhalation and exhalation. I miss walking into our apartment living room, to find him sprawled out on the couch, mouth wide open, reddish hair sticking up in every possible direction.

I am homesick this morning, Dear Readers—for all of the little things that make our life beautiful. I miss the sound of Wallace the Wonderful and Alderaan charging through the living room on the way to their food dishes. I miss the squeal of the tea kettle and the giant mug in the cupboard that reads, “I Freaking Love You”. I miss the scent of our laundry detergent. I miss the taste of chocolate chia pudding (with a dash of cayenne and cinnamon in it).

I miss my clothes.

I miss feeling comfortable in my own my body—the body that didn’t have a 24/7 accessed chest port or an off-centered unicorn horn sticking out of her head.

I miss my life.

Most days, I try not to think about home. I try not to think about the future at all. Yet, here I am, pinning for the comfort of a thick sweater and the orange glow of the Himalayan Salt Lamp in our bedroom. I find myself wondering if my immune system will allow us to fill our screened-in porch with flowers again or if I’ll even be able to sit outside in the sun, sans mask, to write.

It’s the little things that make a life wonderful…and it’s all the little things that I am missing today.

If I am being honest, Dear Readers, I know why this is happening. We received good news yesterday—the tumor is shrinking! Treatment is working! My oncologist is reaching back out to his colleagues in Boston (where I will eventually be transferred) and additional plans for my ongoing treatment will be made. And, while I am beyond relieved and grateful for these positive developments, it makes my status as a hospital inpatient a bit more difficult to bear. It makes the clock’s hands tick louder. It makes each infusion and injection feel a bit more important…because I want each subsequent treatment to work just as well as the preceding ones. I feel as though there is pressure building, an impatience for this cancer to be gone, because I want to be home. I want to be healthy. I want this chapter of my life to finally close and be behind me once and for all.

I don’t mean to sound like an ingrate. I know that this is the privilege of good medicine and responsive genes allowing me the luxury of homesickness. I know, that even in this sadness and discomfort, that I am profoundly blessed.

And, maybe that’s the lesson of this day: that gratitude and homesickness can hold hands. That having something to be grateful for, having hopes and dreams for the future wouldn’t be as sweet if not tempered by the prospect of loss. That, even amid our uglier emotions, there is an opportunity to cultivate still more gratitude and grace.

I hope this week has been kind to you, Dear Readers. I hope, that if you find yourself in a situation of mixed emotions, that you give yourself permission to feel or at least acknowledge the existence of both. Because we’re human, because we’re beautifully complex, because our emotions are a part of our experience here.

As always, thank you for your continued prayers, warm wishes and good thoughts. They are working! I can’t do this without you.

I spent my twenty-fourth birthday in an outpatient cancer clinic. I had a lumbar puncture that day—in which a chemotherapy agent was injected directly into my spinal cord. After that, I was led out to the infusion bay where I was to receive still more chemotherapy, this time as an infusion and with the use of an IV pump and the ash-split (picture two tubes with plastic clamps and nozzles) hanging from my chest.

I don’t remember being upset about spending my birthday that way; treatment had, at that point, been my regular routine—my life—for seven months. It simply made sense to be at the cancer clinic and if the receptionist, when checking me in, or the nurses, when verifying my identity before administering my chemo, wished me a “Happy Birthday”, then great. Wonderful.

You can imagine, Dear Readers, my surprise when, after settling into an infusion chair, additional members of my care team began to arrive in the bay. I didn’t have time to ponder their appearance because it seemed, suddenly, as though everyone—the medical assistants, the nurses, my oncologist, anyone that wasn’t in the middle of an appointment with another patient—had gathered around me, singing “Happy Birthday” in beautiful chorus. One of the research nurses rolled out a cake that she had baked and decorated with buttercream frosting. A helium balloon was tied to my chair.

If I didn’t cry in that moment, I have cried nearly every time since when recalling that day. The memory of that birthday—the first birthday I shouldn’t have had—has become a touchstone for me. In moments in which I feel alone, I remember my care team filling that infusion bay. On days when I question my right to be here, to be alive, I think of their bright smiles, their singing, their wishes for a good day, a healthy future. When I fall into the trap of dreading the aging process, of thinking that I haven’t accomplished enough for my age, I remember the flood of gratitude, the lifting of my heart, that that one balloon and cake perpetuated.

As I embark on my thirtieth year of life, it would be dishonest of me to say that I have no concerns, no sense of loss. The truth is, I do grieve the life that I thought I would have had by now (i.e. stable career, marriage, house, planning a first pregnancy). I do often wonder if there’s been some cosmic error and I’ve been mistaken as an adult when I’m really just a big kid with no idea what she’s doing. I feel all of those things, I think of all of those things. But I also know that each successive year is a gift.

We were not guaranteed our first birthday.

We were never promised that we would see our eighteenth birthday.

We were not assured that our thirtieth birthday would ever arrive.

Will remaining positive about aging be easy? Certainly not. Will there be moments when nostalgia strikes and blinds me to all of the wonderful things currently unfolding in my life? Sure. But, I refuse, absolutely refuse, to take this birthday for granted. I refuse to be ashamed of the laugh lines appearing on my face. I refuse to be angry toward the aching and often pain-riddled body that has carried me this far.

Until my next birthday arrives, this will be my best year.

This birthday—this big, beautiful milestone of a birthday that almost never happened—is a gift I fully intend to embrace.

There is something truly magical about Halloween—and I am not referring to ghouls, goblins or foaming, green potions. I am, simply, lauding the fact that Halloween is the one night of the year that we are each invited to stretch our sorely underutilized imaginations and be whatever it is that we want to be.

We can save the world as firefighters or superheroes.

We can be our polar opposites and don the masks of villains.

Or, we can reconnect with the parts of ourselves that we thought were gone, lost when the world turned cold and ugly.

For me, the last few Halloweens have felt a bit like taking a ferry ride on a windy day. I couldn’t find my sea legs; I couldn’t find a costume that really felt like home. I tried ascribing my uneasiness to the fact that I was branching out—replacing my usual elvish and princess costumes with devil horns and sparkly tops. And, yes, the high heels fit, but it didn’t feel right, it didn’t feel like me.

One of the hardest parts of cancer survivorship to grasp—and live with—is the way in which it impacts your sense of self, your sense of worth. Even after your hair grows back and the scars begin to pale, it’s hard to see beauty in the mirror. It’s hard to see anything, really, beyond the ghost of bandages and hospital gowns. The eyes that stare back at you cannot see the teenage version of you that dressed up as Arwen from Lord of the Rings. Those eyes no longer belong to the little girl that, for nearly every Halloween, was some version of a princess.

It was with this thought in mind—that I could never be a princess, never be an elf again—that I prepared for this Halloween weekend. I needed a costume, preferably a cheap costume, and yet no matter how many times I searched Pinterest, nothing was really speaking to me.

And, just as the panic was starting to settle in to stay, I found one of my elf ears.

The ear was sitting atop my old desk, inconspicuous among a stack of well-worn books and pens, as if I had simply taken it off and forgotten to put it away. I knew, even as I picked the ear up, that I couldn’t be Arwen. I was missing an ear and, even if Arwen’s silvery dress still fit, there was no way I could step into that role. Arwen was beautiful. She glowed. And what did I look like? What did I do? I had circles under my eyes from not sleeping well and scars from procedures that Arwen’s character would have never even heard of.

No, I couldn’t be Arwen.

But I could be an elf…missing an ear…if I donned a head bandage splattered with faux blood.

It’s silly-sounding, I know, but there was peace in parting my hair and pinning it up like an elf’s. There was something grounding about watching my face transform in the mirror, glowing gold and silver with make-up. There was something empowering about putting on my one ear and covering the other—the missing one—with gauze.

I’m still an elf.

Maybe I can’t be Arwen anymore. Maybe I am tired now and have seen too many ugly things—but I can be the elf that went to battle. I can be banged up and bloodied, and I can still be beautiful.

Because, dear readers, that’s the magic of Halloween. We can be anything we want to be—including ourselves.

Top Posts & Pages

*Please note that the content of this blog is a reflection of the author's personal thoughts and experiences. It is not intended to serve as a self-help guide nor should it in any way, shape, or form replace professional mental health services. If you are in crisis, or in need of support, please reach out to a professional within your community.